Would You Rather Grow Old at Home With Your Family or Alone in a Nursing Home?

April 22, 2015

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Twenty-seven million Americans are expected to need some form of long-term care by 2050, but we, as a society, are unprepared to provide that care. To address the gaps in our social-welfare infrastructure, Ai-jen Poo, a longtime labor advocate and MacArthur Fellow, is on a mission to change the way we give, receive, and think about care. In her new book, The Age of Dignity: Preparing for the Elder Boom in a Changing America, written with “book doula” Ariane Conrad, Poo argues that coping with the impending elder-care crisis requires building a new kind of infrastructure: a “Care Grid” that will bridge generations, create sustainable jobs for caregivers, and ensure that elders can age in their communities while staying connected to loved ones.

Poo is the co-founder of Domestic Workers United and the director of the National Domestic Workers Alliance, as well as co-director of Caring Across Generations, a campaign to change the policy and culture around care work. Her book is available now from The New Press, and she is currently on a book tour around the country, hosting conversations about care and the future of an aging society.

Poo spoke with Michelle Chen and Sarah Jaffe, co-hosts of Dissent magazine’s Belabored podcast, about the book, the culture of aging, how racism and sexism have contributed to the isolation and exploitation of domestic workers, and what else would change in a society that truly valued care. Drawing on her experiences as both an organizer and caregiver, she sees the care crisis as an opportunity to braid the labor, immigration, and gender-equality movements together to empower communities. This interview has been edited for length and clarity.

Michelle Chen and Sarah Jaffe: The premise of your book is that we need a “Care Grid,” a new kind of infrastructure to face what you call the “Elder Boom” of aging Baby Boomers. Why do you see homecare as integral to that model, and preferable to nursing homes and the like?

Ai-jen Poo: The dominant way that people receive long-term care in this country has been through the nursing home and institutional model. And for many, many years, advocates have been calling for change in the nursing-home system because it’s been rife with problems, both in terms of how the patients are treated, and the sort of factory-like nature of the institutions—the way that they can be incredibly dehumanizing—and also the way that the staff are treated. Most institutions are way understaffed.

My grandfather on my father’s side spent the last three months of his life in a nursing home. It was an experience I’ll never forget, visiting him in a room at the back with half a dozen other people, half of whom were completely unmoving, and the other half were wailing in pain and suffering. My grandfather hadn’t eaten or slept for what seemed like days. He was afraid. He was convinced that he was going to die, and indeed he did pass away after three months. It was an incredibly dehumanizing experience and it haunts me today.

There are examples of nursing homes that have provided a more caring and homelike environment for elders. But I think the dominant model has been one that has been more dehumanizing and cold. Now we’re at a point where more and more people are choosing home care. An AARP survey showed that 90 percent of Americans prefer to age at home while remaining connected to their communities and families. People are familiar with their homes and communities; it’s much easier to live life on your own terms, to eat when you want to eat, to go places when you want to go places, to have control and self-determination.

In the kind of ecosystem of care you envision, how do you see unpaid family caregivers—who may be relatives of the person being cared for—working alongside professional care providers?

Family caregivers and paid or professional caregivers are part of a continuum of care that we’re going to need to support the 27 million of us who are going to require some form of long-term care assistance by the year 2050. It’s really an all-hands-on-deck opportunity. It’s been proven through lots of research that the more coordination and collaboration, and the more of a sense of a team that there is between families, family caregivers, and professional caregivers—in addition to the whole circle of healthcare professionals involved—the better the quality of life, and ultimately, the more impactful the care.

Can you talk about the way women are assumed to be naturally inclined toward care, and how this has created the exploitation of care workers?

Women are really on the front lines of this growing demand for care, on all sides of the equation. Women are living longer, so more and more of the people who are going to need care in the system are women—like my grandmother. And then, most of the family caregiving—about two-thirds of it—is still done by women. And then, about 90 percent of the paid caregiving workforce is also women—and when it’s paid, it’s paid extremely low wages, which are very difficult to survive on. And when it’s unpaid, it’s often unrecognized and underappreciated. We, in our society, have not adequately accounted for the work that goes into raising families across generations.

In an essay that Gloria Steinem wrote over 20 years ago, called “Revaluing Economics,” she describes the work that goes into raising families as one of the two fundamental resources that drive everything else in our economy and society—the other being the planet’s natural resources. Those two resources have been made invisible, and often exploited, and certainly unprotected, so that we’ve created an unsustainable reality, both economically and socially. In order for us to find sustainability in the 21st century, ultimately we need to put valuing family care and the planet’s natural resources at the center of our vision for the future, to try to shift this dynamic that has led to not just women bearing the brunt, but really an unsustainable situation for anyone.

How does your experience organizing with domestic workers—starting out here in New York City with Domestic Workers United, and going on to the National Domestic Workers Alliance and Caring Across Generations—connect to what you’ve laid out in your book?

The National Domestic Workers Alliance represents 45 local affiliate organizations in 26 cities around the country, all representing housekeepers and caregivers for the elderly, and it’s all women who go to work every day in other people’s homes.

We started out articulating how valuable this work was, so that we could really raise the level of respect for this work. We also wanted to establish basic protections for domestic workers, to try to undo the legacy of exclusion and discrimination against this workforce that’s been codified in our labor law. Many people don’t know this, but domestic workers and farmworkers were excluded from our nation’s core labor protections that were part of the New Deal in the 1930s, and those exclusions have defined much of reality for generations of domestic workers.

I think at the heart of it was realizing how much of this was about a devaluing of the work that women have historically done to care for families, in addition to the kind of structural racism that has led to the exclusion of this workforce being really written into the law. Then, as we started to understand this country’s changing, aging demographics, we realized how much this workforce is a part of the solution to so many of our nation’s challenges ahead. It’s not just about domestic work, it’s really about the values that will shape the economy of the future. It’s about what the social contract will look like and what kind of opportunity it will create.

With these types of specific exclusions affecting domestic workers, how has this idea of a special class of workers drawn down wages, and created worse conditions for all workers?

I think that if it’s possible to devalue any one form of work, then it creates a downward gravitational pull within our economy. In some ways, domestic workers are canaries in the mine. Our campaigns provided an opportunity for us to make domestic workers protagonists in thinking about what kind of economy we need to create for the future.

It’s possible to organize domestic workers, and it’s possible to raise wages for home care workers, and it will be possible to do that for all of these other workers who are vulnerable in this economy. But what fighting for these goals has shown us is that we have to be very creative in finding solutions. It has also revealed how we need to be building movements for the future that really do account for the new nature of work in our economy.

A theme that you turn to again and again in the book is the immigrant background of the caregivers. Talk about your work with the coalition We Belong Together.

We Belong Together is a women’s campaign for fair immigration reform, which started out of the recognition that just about everyone who cares about families and cares about women—and security and opportunity for women—should care about immigration reform. When we think about the impact of not having a path to legal status for undocumented immigrants, the fact that 11 million people are trapped in the shadows—the kinds of vulnerabilities that creates for women are serious.

After some of the anti-immigrant bills passed in states like Arizona a few years ago, we started hearing about women who were facing domestic violence and other forms of violence who were afraid to come forward, for fear of detention or deportation. Unscrupulous employers are also more than willing to take advantage of the fact that women are afraid of being separated from their families: Employers not paying wages, sexual harassment, these are the kinds of stories that we’ve heard. Any woman or any person who cares about families and the future of the American family has a huge stake in eliminating this realm in our society that makes families vulnerable, makes women vulnerable, and creates this unbelievable insecurity within our democracy.

What would a good employer-employee relationship look like for caregivers?

We are working with a group called Hand in Hand on developing a Fair Care Pledge that employers can take, which demonstrates that they are aware that their home is someone’s workplace, and they’re committed to fairness in that caregiving relationship. The Fair Care Pledge has three elements to it: The first is fair pay, the second is paid time off, and the third is a clear work agreement. So those three elements provide a really solid foundation for there to be a healthy and fair relationship in the home-based employment relationship.

We’re finding that employers oftentimes want to do the right thing, and are just not quite clear what that is. Well, here’s a very clear set of guidelines and principles for how to think about this relationship. It serves as a really good starting point for thinking about what values should shape this relationship in the future.

In the book, you also mention the example of care worker co-ops, like Cooperative Home Care Associates in New York. What benefits do co-ops have for care workers, who have low overhead but are often really isolated in their work?

Worker-owned cooperatives are a really important model for an alternative way of structuring an organization or business, so that workers have control and can actually define the conditions of their work and the terms of their work. Cooperative Home Care Associates is the shining model, it’s based in the Bronx and has over 2,000 members now. The workers own the company, they set the wages and the terms and the working conditions. They’ve created a viable, strong agency that provides quality care to thousands of people in New York City. It really does show what’s possible. It’s something that’s hard to build, it takes time, it takes energy, it takes a really strong commitment to purpose and values, but it is something that it’s worth trying to build in other contexts. Some of the values that shape the cooperative home care model can actually be applied in any agency, and we’re hoping that they will be—that they can be promoted, whether they’re in a worker cooperative or not. That fairness and that culture of really honoring the contributions of workers—that actually can be applied anywhere.

When reading your book, it becomes clear that in calling for society to value care, you wind up calling for a pretty radical change. What other kinds of changes do you think we’d see in a society that really valued care?

We would see enormous potential on the part of women, working women, who are also the family caregivers, being just released into the universe, all of that creative energy and talent and all of those contributions that are really dampened by the lack of an infrastructure to support family care. We’d see women’s leadership and women’s contributions in the workplace and in the economy just flourish.

I think we would see the transformation of childcare and other care work from poverty-wage work that is invisible and undervalued into professional jobs with opportunities for career advancement, where each generation can do better than the last, similar to what we did with manufacturing in the 1920s and 30s. We could make sure that every single one of our loved ones who’s growing older and needs support to live life on their own terms actually has the support to do that.

Ultimately we would have a much more sustainable and balanced relationship between our family lives, our lives that are about taking care of and raising our loved ones, and our work lives and creative lives. There would be a more balanced relationship between all of the aspects of who we are as people.